A little over 10 years ago, following the demonstration of the relevance of the screening program of two hospitals under the leadership of doctors Denis Soulières (CHUM), Nancy Robitaille and Edgard Delvin (CHU Sainte-Justine), Quebec began a universal screening program for sickle cell disease.
Unknown to the majority of the population, and even to leaders, sickle cell disease is a genetic condition that is two to three times more common than cystic fibrosis, which is known to all. These two diseases affect multiple organs and considerably reduce life expectancy. But not quite.
In the case of cystic fibrosis, specialized clinics have existed for over 30 years, they are adequately staffed and have benefited for several years from a therapy that radically modifies the progression of the disease, which gives a life expectancy that is clearly increasing.
As for sickle cell disease, it is a condition that is still little known—neglected—because it is emerging, linked to the immigration of Afro-descendant populations that has been taking place for several decades. So much so that screening became necessary 10 years ago, and sickle cell disease is now the most frequently screened genetic disease in children born in Quebec. Furthermore, the government’s decision not to disclose cases of healthy carriers does not allow for the transmission of advice and information on the risk of having affected children.
Therefore, it would seem normal for the government to take care of the cases that it finds relevant to screen. Of course, some hospitals have set up programs that take in these patients, at pediatric age and then at the age of majority. However, in contradiction with its assumption of responsibility associated with the other diseases screened, Quebec does not provide sufficient and sustainable funding for the care of these patients. And this distressing chronic blood disease is also not one of the priorities of the Canadian government, despite the recommendations of the World Health Organization.
It is sad to see the authorities’ lack of knowledge about a disease that affects Quebecers, by birth or from immigration, and that causes mortality and morbidity. No one expects the Minister of Health and his office to know about all the diseases. It is impossible, even for the medical profession. However, how can we explain that the government stopped its intervention after implementing its screening program?
This is a question that should be asked, especially since sickle cell disease, like cystic fibrosis, could be the subject of an innovative treatment that would reduce the associated morbidity and mortality. The government must therefore adopt a care program for patients with sickle cell disease that would include new therapies when indicated.
Government action is essential to ensure that enough health professionals, doctors and others, are available and trained; that physical locations are available to receive these patients and that they receive care there; and that a climate of cultural safety reassures these patients and allows them to affirm that their needs will be recognized, regardless of their origin or the color of their skin.
Improving care does not happen spontaneously. It requires research, prioritization and awareness, in addition to the necessary leadership.
During the recent parliamentary session of the Canadian Senate, a bill recognizing the need for a national framework for care for sickle cell disease, tabled by Senator Marie-Françoise Mégie, received the assent of her colleagues. It is up to the provincial and federal governments to act in a logical manner with the actions previously taken and the intentions already expressed so that Quebecers and Canadians perceive that their citizenship is valued.